The statistics are staggering.
Some 90 percent of Deaf or hard-of-hearing children are born into families with no experience with Deafness, and 75 percent of families do not sign with their children, creating a huge barrier to communication during their formative years.
Fewer than 40 percent of Deaf/hard-of-hearing individuals work full time, and many are forced to rely on government assistance like Social Security Disability Insurance to survive. One in four have resigned from a job due to discrimination and lack of access to communication.
Hearing loss also disproportionately affects senior citizens, with disabling hearing loss impacting 25 percent of those aged 65 to 74 and 50 percent of those over the age of 75. Meanwhile, there are only a dozen Deaf-exclusive facilities in the U.S. Many seniors with hearing loss are turned away from traditional facilities because they’re unwilling to provide American Sign Language interpreters.
“The Americans with Disabilities Act implies that we have a right to access reasonable accommodations,” said Joelene Orlando, associate director at WHOLE ME, Inc., a Syracuse-based nonprofit that provides services to the local Deaf community. “You would be surprised to hear that most hearing people do not know what the ADA is. We face a lot of discrimination.”
And for Deaf women, the problem is even worse.
“Deaf women experience challenges to career and education advancement just as women do, but being Deaf adds another layer of challenges and obstacles,” said Rebecca Dadey, associate professor of ASL and chairperson of World Languages Dept. at Onondaga Community College. “Deaf women often need to balance family with work, deal with gender discrimination, and deal with audism [discrimination against Deaf people].”
Despite that double discrimination, until recently, there was very little support for Deaf women in Central New York. WHOLE ME is addressing that with a new group that launched last fall thanks to a grant from the Central New York Community Foundation’s Women’s Fund. The $7,500 grant, part of $30,000 in grant money given out to public charities that support women and girls in Onondaga, Cayuga, Oswego and/or Madison counties, funds a pilot program through June that offers support to women in the community at all stages of life.
“We believe that networking truly is the golden egg when it comes to helping others and we felt that may help inspire our Deaf women in gaining some real valuable resources, information and support in all aspects of our lives,” Joelene said.
The first meeting was held in October. The group aims to meet twice a month and averages about 12 to 15 people at each meeting.
“Everybody’s at a different phase in their life, whether they’re graduated from college, or they’re looking for a job, or they’re new parents,” said Joelene, who provides employment services at WHOLE ME. “We all have something that we can offer, and we kind of share our ideas, tips, advice. But we’re also helping a lot of other women who are struggling with resources or having access to services and programs, and I’d be like, ‘Oh, I know somebody. Let me hook you up with this person.’ It’s really, we really wanted to create a networking system for Deaf women, and that was one of the main reasons why we wanted to create that program.”
There are roughly 1,500 Deaf/hard-of-hearing children and adults in Central New York. WHOLE ME — which stands for Work, Health, Organizational skills, Life experience, Entertainment choices, Math, English — works to reframe the stigma of “hearing loss” into the possibility of “Deaf gain” and to highlight the contributions of Deaf culture. The organization has eight full-time staffers, six of whom are Deaf, including Joelene and outreach/advocacy coordinator Lindsay Ryan Anthony.
“We tried to set up [a women’s group] two or three years ago, but at that time we didn’t have any funding,” said Lindsay, who is finishing up a master’s degree in social work at Syracuse University. “We’re lucky; that donation really helped us.”
The women of WHOLE ME are hopeful that the Women’s Fund will continue to support the group because they believe their work is just beginning.
“There’s so much more that we want to be able to do,” Lindsay said. “Deaf individuals, for a while, for many, many years there’s been a history of oppression, discrimination, and there’s a great need for programs and services.”
Joelene and Lindsay said they hope to make Syracuse more like Rochester, one of the most Deaf-friendly communities in the country.
“If you go to a Wegmans or even a Starbucks, there’s somebody there that’s going to know sign language, even in the most basic form,” Joelene said. “Then if you come here, you don’t really see it much.”
The group has discussed getting that kind of awareness and involvement here in Central New York. In order to help accomplish that goal, WHOLE ME is hosting an awareness event from 3 to 6:30 p.m. at their offices at 1010 James St., Syracuse (see sidebar).
“We want to invite families, students, the community at large, politicians, teachers from other school districts to come and see what type of resources are offered, and how we can increase that visibility here in Syracuse,” Joelene said.
The group has also met with Syracuse Mayor Ben Walsh and is working to join advisory boards, including the city’s Advisory Board for the Office of the Aging.
“We need to know what the community needs in order to help them,” Lindsay said.
They’re also open to going to different venues and speaking about Deaf culture, access to communication and more. In addition, the women’s group will be taking part in a number of activities to increase their visibility, from fun events like rock climbing and Painting with a Twist to helping the Deaf camp in Old Forch, Camp Mark Seven, set up for the summer of 2019.
“We want to be a household name by advocating for Deaf women in Central New York,” Joelene said.
That starts, Lindsay said, with awareness.
“Other individuals may have a physical disability or a developmental disability, but they still have their hearing. There are some people that use wheel chairs, for example, but their communication ability is fine. So, Deaf individuals, they go through life and their disability is kind of hidden,” she said. “There’s a Deaf attorney in Syracuse. His name is Michael Schwartz. One thing that he commented before and it really resonated with me was… he said something to the effect of, society is set up so that we are always at a disadvantage. If we’re dreaming big, Deaf people would be able to participate in all aspects of life. There would be no difference for them. We can hope, but we have to keep fighting the good fight.”
What is WHOLE ME?
WHOLE ME’s programs include:
- Afterschool program for K-12
- Transition services/employment training
- Interpreting referral services
- Community outreach/advocacy services
- American Sign Language classes
- Deaf women’s group
- Deaf men’s group (in the planning stages)
- Assistive technology training
- Social Security Administration benefits counseling
- Case management services
- Work with families of Deaf children
- Deaf awareness community events (including one to be held March 20)
To learn more about WHOLE ME, attend their awareness event:
3 to 6:30 p.m. Wednesday, March 20, WHOLE ME, Inc., 1010 James St., Syracuse.
Families, educators, shareholders, etc. can learn about Deaf programs, services, products and educational opportunities. RSVP to Joelene Orlando at firstname.lastname@example.org.